Endo Shaming

Since antiquity, the practice of medicine has always been about the relationship between a person and their medical practitioner.

Today, this relationship is associated with certain ethical and legal privacy protections to both parties.

It's also a fact that diabetes is a patient managed disease. The individual literally makes hundreds of choices daily which directly or indirectly influences his/her state of health. This reality may sit poorly in the minds of some health care providers who seek to direct their patient's care exclusively through prescriptions and/or written or verbal instructions delivered in the privacy of the office or exam room.

Nowadays more providers are being paid by employers based in part on their patients’ medical outcomes. Specifically, their compensation is influenced by the percentage of patients they follow with an A1C above a certain level, like 9%. Right or wrong, this is a working reality in 2016.

Many people believe the solution to is to hold doctors accountable for their patients’ outcomes. But unlike the quality of an item produced by a craftsman or assembly line, there is an incorrect assumption by the health care system that a 'good' provider wields supernatural power over their patients' choices.

Under growing production and financial outcomes pressures like these, tempered with the expectation that the health care provider should know “just about everything there is to know”, some providers may resort to various forms of verbal shaming of their patients in an effort to influence attitudes and behaviors in the relatively brief time they have together at a visit. If you've been the parent of a teen you can empathize with the temptation to resort to shaming under the guise of care and love.

How does endo shaming work?

It’s an easy path. There are many hot button topics a provider can push in an attempt to 'inspire', 'light the fire', or stir the patient or family to action. For example, reviewing A1C values with a disdainful look or by issuing comments like "what have you been up to?" or "this isn't very good". And what about “this result isn’t as good as last time”. Never mind that the reference might be to an A1C of 7.2% today versus 7.1% last time. When can “good enough" actually BE good enough?

Shaming might also take the form of picking out those few out of range blood sugars in the log book or CGM plot and then grilling their patient for why this or that happened. These actions may easily come out of a frustration of never having the whole picture in front of them. The information available is but a fraction of what actually went into creating those points of data.

Of course the endo can easily “go nuclear” in bringing up all those diabetes complications you might fear: telling you how you might lose your feet, go blind, or require kidney dialysis in the not too distant future. For men the dreaded discussion around impotency can raise its ugly head. And that eyebrow raised in response to a few pounds of extra weight gain since the last visit might just be the subliminal straw that breaks your emotional ‘back’ and spirit.

A lecture about how you might be hurting yourself or your d-child because of an A1C result rarely motivates and more often plants seeds of doubt and anxiety.

On the flip side, some endos might say the A1C is too low; their assumption surfaces in comments like this:

"You must be having too many low blood sugars and that is too risky".

Endo shaming is a real and present danger for many of us with diabetes. It disempowers patients and rarely inspires a 'can do' attitude. What's more likely is a hasty exit from the exam room with a gnawing sense of desperation and shame.

For the record, I too have been guilty of endo shaming. I try hard each day not to do this. And to anyone I've shamed and not realized it, I am truly sorry.

Doctors and other medical providers don't always realize that words can be cut deeper than any scalpel. More often than not they really do want what's best for you although how could they really ever know what that truly means?

When we see our diabetes health care providers we should expect support and understanding, realistic care plans, and achievable treatment goals. Too often, no matter how well we do, it just might never seem good enough.

Shaming can arise just as much for what you DON’T DO as it can for those actions you do.

I've been lucky. My first endo helped me see the light and never shamed me. In fact, he patiently steered me into realizing what I needed to do to take charge of my own diabetes. That took a number of visits. To his credit, he was patient, consistent, and resilient in the face of my resistance to change. He possessed as a provider the 3 virtues I respect so deeply in anyone striving to take charge of a chronic, self-managed condition: Patience, Consistency and Resilience.

I sometimes see children whose family members actually WANT me to lecture them in some way (a form of shaming) to spur them to better self-care, lower A1C or make fewer trips to the hospital for DKA or severe lows. In some cases, the child has been set up to fail by unrealistic expectations placed upon them by family. Kids are not little adults and becoming truly empowered to manage diabetes requires time and lots of family support with minimal criticism and maximum support and understanding.

Please share examples (no names please) when praise and encouragement were used as well as some examples when a provider may have relentlessly used shame as a motivator. Did either style work for you? Is shaming is ever helpful?

I look forward to reading your stories and examples.